Anonymous wrote:A lot of parents in this thread are saying it's fine to wait to tell.

Our daughter was diagnosed at 11 yo and because we were not sure we agreed with the diagnoses and because it was during a weird time with covid, we waited a year to tell her.

Our daughter is still upset with us over this because she feels the diagnosis explains a lot of things about herself that she was blaming herself for. It gave her a certain freedom and acceptance of herself. My daughter says, "it really affects your perception of yourself and allows you to be easier on yourself, to know the diagnosis. And it's not the sort of information you can keep to yourself -- it profoundly impacts the experience of your child. The longer you wait, the worse it will be -- for yourselves and for your child -- when your child does find out. It is your child's right to know, and you should tell them now, you're not doing yourself or your child any favors by keeping it a secret. It's a very common experience for people getting an ASD diagnosis to feel a weight lifted off your chest, to know that you're not weird or deficient, but there's an explanation for your experience and feelings."

Just to go against the grain of all the other parents in here -- from a kid's perspective, my middle schooler would have preferred to know when we knew.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I wouldn’t advise opening that can of worms where any kid or adult or parent can simply negate a doctor or Dx. If you want compliance down the road, don’t start dismissing teachers and doctors and experts in front of an adhd or Asd kid.

Keep going with the adhd treatment and say they always monitor for comorbidities and one is ASD. Others are anxiety, depression.

Right! Far better to put aside diagnosis out of hand for now and not even tell the kid that a doctor diagnosed them with it -- that is not at all "simply negat[ing] a doctor or Dx" even though it actually fully withholds the info of the actual diagnosis from the child.

Your proposed solution of telling the child about comorbidities is better than nothing imho, but is still deficient. The kid has a right to know of their actual diagnosis that they sat through testing for, and I have lived through this with my own kid, but wtf do I know?

Anonymous wrote:

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I wouldn’t advise opening that can of worms where any kid or adult or parent can simply negate a doctor or Dx. If you want compliance down the road, don’t start dismissing teachers and doctors and experts in front of an adhd or Asd kid.

Keep going with the adhd treatment and say they always monitor for comorbidities and one is ASD. Others are anxiety, depression.

Anonymous wrote:What other criteria for the diagnosis were in the report besides the lack of back and forth conversation?

My daughter had other criteria mentioned and we weren't totally sold that they fit or were correctly described in the report. But on the whole, and as our kid aged, I can see how the diagnosis fits. For example, while my kid is sensitive to issues of social justice and helps out other kids who are struggling (something I though ASD kids weren't supposed to be able to recognize because I thought ASD kids lacked empathy ha ha jokes on me), there is a little bit of a wall up in seeing/recognizing what's going on with other people in a way that she doesn't really even know she's missing, such as, like, sometimes failing to recognize when a situation is supposed to be centered on another kid, or not thinking about someone's birthday unless we ask her to, if that makes sense. Also I didn't realize it when she was younger but sometimes on the playground she was more following the big group of kids around than actually playing in the big group itself -- so it seemed like she was a part of the group but was actually more parallel to the group, if that makes sense. I didn't really understand this until after I read more about ASD and how it can present and took a hard look back at things I missed. (She was also evaluated for ASD early on but was considered not to meet the criteria when younger -- though because a large part of diagnosing ASD is the behavior that parents self report, if the parents aren't grokking the behavior that meets the criteria and describing it on the forms, then the earlier diagnosis will be missed.)

I don't mean to represent my kid as someone who has fully developed social skills who presents as totally normal. Some kids see my kid's emotional disregulation at school and don't like them. They are more nerdy and not in the popular crowd. But they still have a core group of friends that they enjoy spending time with.

I would tell your kid their diagnosis and let them know you're not sure it really fits them (you can even say why), but let them know that you thought it was important for them to know and that you can look at it together as they get older and see if it really fits or not. Good luck!

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.

op - this is so interesting bc this seems like emotional regulation as the core deficit that gained you the asd dx? or is it that the emotional outbursts are related to social issues?
I think this is where a lot of parents are getting tripped up where kids are getting asd dx based on emotional regulation which may be fine and great, but diverges from most people's understanding of the core deficits that constitute a dx.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.

op - this is so interesting bc this seems like emotional regulation as the core deficit that gained you the asd dx? or is it that the emotional outbursts are related to social issues?
I think this is where a lot of parents are getting tripped up where kids are getting asd dx based on emotional regulation which may be fine and great, but diverges from most people's understanding of the core deficits that constitute a dx.

Anonymous wrote:I'm not sure I really understand what you're saying but she has ADHD also.

Anonymous wrote:If the main driver of the ASD dx was lack of reciprocal conversation with the evaluator (an adult stranger) and you and his teachers aren't seeing it, it sounds like a mis dx, especially given that the adhd seems like a much better fit.

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.